Thursday, June 29, 2017

Sentenced to death by the European Court on Human Rights

You’ve probably never heard of Charlie Gard.

He’s a terminally ill 10-month-old baby who has now been s– an Orwellian organization if ever there has been one – which determined that while his parents wanted to take him to the United States for a long-shot potentially life-saving treatment, they could not. Instead, the Court ruled, the Great Ormond Street Hospital for Children would withdraw all life support, killing Charlie. What was the Court’s justification? Charlie had to “die with dignity.”

Charlie suffers from a mitochondrial disease that destroys the muscles and the brain. There was no available treatment in the United Kingdom, and so Charlie’s parents, Chris Gard and Connie Yates, raised $1.6 million to fly him to the United States for an experimental treatment. But the hospital argued that the treatment wouldn’t help Charlie, and would prolong his suffering, and that they knew better than the parents who had to suffer through his illness and care for him every single day. Thus, the hospital argued that it would be in Charlie’s best interest to die.

UK courts agreed. The Gards appealed to the EU. And now the court has ruled against them, with the ECHR stating, “Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit.”

The hospital issued its own perverse statement:

Our thoughts are with Charlie’s parents on receipt of this news that we know will be very distressing for them. Today’s decision by the European Court of Human Rights marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps.

Despite the hospital’s statement that it would not immediately change his standard of care, his parents now report that the hospital will withdraw his life support on Friday. His parents announced:

We begged them to give us the weekend. Friends and family wanted to come and see Charlie for the last time. But now there isn’t even time for that. Doctors said they would not rush to turn off his ventilator but we are being rushed. Not only are we not allowed to take our son to an expert hospital to save his life, we also can’t choose how or when our son dies.

There are several levels to the perversity here.

First, for all the talk of the evils of the American system of healthcare, at least we promote freedom of choice – and give as many options to people for their care as they can afford. As the doctor who offered experimental treatment stated in court, if Charlie had become ill at “any institution in the US,” they would immediately begin the treatment. But in the UK, a socialized medicine country where individual needs come secondary to the preservation of the “system,” there is less concern with parental rights. In the United States, we are so interested in the freedom to obtain care that we insist on releasing a legally brain-dead girl to her mother, so long as her mother wishes to keep her hooked up to a ventilator; in the UK, they are insistent on withdrawing the opportunity for life-saving care because it’s better to kill the child than keep it alive. While this case became a court proceeding, every single day the NHS makes decisions about how to ration care. Bernie Sanders tweets about how nobody should be denied care because they can’t afford it – but that’s what happens all the time under socialized medicine – and you don’t even have the capacity to raise the money to fund the care yourself.

Second, a government-run system breeds a shift in control. In the United States, the case of Charlie Gard is a major scandal; in the EU, it’s apparently no big deal. That’s because we in the United States like to think that we control our lives and that as parents, our priorities matter more than those of doctors who do not raise our children. But once you give up control over life and death decisions to an impersonal government, it’s nearly impossible to take back that control. This case could have been easy: the hospital could have released the child. The hospital didn’t do so because it believed that it had the final say. And why shouldn’t it? It always has the final say.

Third, allowing the government to control the value of life means devaluing life. It has been a fundamental hallmark of Western civilization that life ought to be preserved, in spite of pain, in spite of suffering – that death is no solution to suffering. But that notion has been stripped away in favor of the secularist standard of “healthy living” – and so in Europe, euthanasia is now available to people who are not terminal, but merely suffer from depression or anorexia. Better to "die with dignity" than live with pain, in the new math. That's a far cry from the original Hippocratic Oath which overtly stated, "Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course," or even the Tufts Medical School version, which stated, "Above all, I must not play at God."

Those who value life want to keep choices about their life in their own hands, rather than turning such control over to an impersonal government agency that guarantees you coverage that it chooses for you. Charlie Gard’s story isn’t merely a travesty of justice and an insult to decency. It’s a warning for people who think that bureaucracies are as interested in preserving your health care priorities as you are.


  1. A European court has ruled that the parents of a critically ill baby cannot privately pay for him to go to the United States for “experimental treatment”, and the child must stay in a British hospital to “die with dignity”.

    The parents of 10-month-old Charlie Gard are reported to be “utterly distraught” after the European Court of Human Rights (ECHR) denied them a final effort to save their dying son.

    After losing a battle in the UK’s Supreme Court, they had appealed to the court in France to fight the decision of British doctors at Great Ormond Street Children’s Hospital, who argued the baby could not be saved in the U.S. and must “die with dignity”.

    Chris Gard, 32, and Connie Yates, 31, had raised more than £1.3 million to take Charlie to the U.S. for partially untested, “experimental” treatment, which they claim could save his life.

    Britain has a socialised healthcare system, and despite the fact his parents raised private funds for treatment, the courts could have acted as what some in U.S. politicians call a “death panel”, decided who is and who is not worth saving.

    “We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain,” the mother wrote on a crowd-funding page...

    Charlie was born healthy, but suffers from a rare genetic condition, called mitochondrial depletion syndrome, and has serious brain damage.

    The ECHR ruled Tuesday that the British hospital was correct and the treatment in the U.S. could not help Charlie. The court said the application by the parents was “inadmissible” and added that their decision was “final”.

    They acknowledged “sensitive moral and ethical issues” had been raised in the case and said they respected the “domestic legal framework” of the UK which had come to the same judgement.

    A spokesman for Great Ormond Street Hospital said in a statement: “Our thoughts are with Charlie’s parents on receipt of this news which we know will be very distressing for them.

    “Today’s decision by the [ECHR] marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps.

    “There will be no rush by Great Ormond Street Hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”

    However, Charlie’s mother argued: “We just CAN’T let our baby die when there is something that might help him! We won’t give up on him because he has a rare disease.

    “He deserves a chance and he deserves a life as much as anyone else. We understand that rare diseases don’t get enough funding for research but why should that be a reason for a child to die?! He’s here now and this could help our baby.”

  2. The parents of terminally-ill baby Charlie Gard have said his life support machine will be turned off later.

    Chris Gard and Connie Yates have criticised doctors after their request to bring their son home to die was denied.

    Great Ormond Street Hospital believe Charlie has no chance of survival and said it was a "distressing situation".

    On Tuesday, Charlie's parents lost their final legal appeal to take him to the US for treatment.

    Judges at the European Court of Human Rights concluded that further treatment would "continue to cause Charlie significant harm", in line with advice from specialists at Great Ormond Street.

    Ten-month-old Charlie is thought to be one of 16 children in the world to have mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage...

    In a video statement Ms Yates, from Bedfont, west London, said: "We've promised our little boy every single day that we would take him home, because that is a promise we thought we could keep.

    "We were told he has to die in that hospital."

    Charlie's parents say they have "begged" administrators to "give us this weekend" to allow his family to say goodbye.

    "Some of our family can't come until tomorrow so the last time they saw Charlie is the last time they will ever see him", Mr Gard said...

    Charlie's parents raised £1.3m on a crowdfunding site to pay for the experimental treatment in the US.

    Ms Yates had already indicated the money would go towards a charity for mitochondrial depletion syndromes if Charlie did "not get his chance".

  3. Charlie's mother wrote on a GoFundMe page several months ago that she and Charlie's father had hope:

    After endlessly researching and speaking to Dr's all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn't been tried on anyone with his gene before (he's only number 16 in the world ever reported) but it's had success with another mitochondrial depletion syndrome called TK2 which is similar — it's helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.

    Great Ormond Street Hospital went to the courts with this question: Was it legal, and in Charlie's best interest, for the hospital to remove the child from life support — even against his parents' wishes?

    In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.”

    “Transporting Charlie to the USA would be problematic, but possible,” he added. “Subjecting him to nucleoside therapy is unknown territory — it has never even been tested on mouse models — but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”

    Francis wrote it was “with the heaviest of hearts but with complete conviction for Charlie’s best interests” that he decided the hospital could withdraw treatment, except for palliative care, to let Charlie “die with dignity.”

    An appeals court, then a supreme court, upheld it, according to the National Review.

  4. Lopez-Gomez C, Levy RJ, Sanchez-Quintero MJ, Juanola-Falgarona M, Barca E, Garcia-Diaz B, Tadesse S, Garone C, Hirano M. Deoxycytidine and Deoxythymidine Treatment for Thymidine Kinase 2 Deficiency. Ann Neurol. 2017 May;81(5):641-652.

    Thymidine kinase 2 (TK2), a critical enzyme in the mitochondrial pyrimidine salvage pathway, is essential for mitochondrial DNA (mtDNA) maintenance. Mutations in the nuclear gene, TK2, cause TK2 deficiency, which manifests predominantly in children as myopathy with mtDNA depletion. Molecular bypass therapy with the TK2 products, deoxycytidine monophosphate (dCMP) and deoxythymidine monophosphate (dTMP), prolongs the life span of Tk2-deficient (Tk2-/- ) mice by 2- to 3-fold. Because we observed rapid catabolism of the deoxynucleoside monophosphates to deoxythymidine (dT) and deoxycytidine (dC), we hypothesized that: (1) deoxynucleosides might be the major active agents and (2) inhibition of deoxycytidine deamination might enhance dTMP+dCMP therapy.
    To test these hypotheses, we assessed two therapies in Tk2-/- mice: (1) dT+dC and (2) coadministration of the deaminase inhibitor, tetrahydrouridine (THU), with dTMP+dCMP.
    We observed that dC+dT delayed disease onset, prolonged life span of Tk2-deficient mice and restored mtDNA copy number as well as respiratory chain enzyme activities and levels. In contrast, dCMP+dTMP+THU therapy decreased life span of Tk2-/- animals compared to dCMP+dTMP.
    Our studies demonstrate that deoxynucleoside substrate enhancement is a novel therapy, which may ameliorate TK2 deficiency in patients. Ann Neurol 2017;81:641-652.

  5. Our gorgeous little 7 month old boy Charlie has a devastating disease called mitochondrial depletion syndrome. Me and his Daddy Chris are both carriers of a faulty gene.

    He was born on the 04/08/16 (4th of August) perfectly healthy but then he started to decline. We took him into hospital at 8 weeks old and none of us have been anywhere near home since. We have been with Charlie day in, day out & watched our poor baby get weaker and weaker, he now needs a ventilator to breathe but we have never lost hope throughout all this time! After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain...

    We just CAN’T let our baby die when there is something that might help him! We won’t give up on him because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else. We understand that rare diseases don’t get enough funding for research but why should that be a reason for a child to die?! He’s here now and this could help our baby.
    If Charlie receives this treatment and it does work like the Dr in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndromes.

  6. Charlie is a 10-month old patient in intensive care at Great Ormond Street Hospital (GOSH) in London.

    On August 4, 2016, he was born a "perfectly healthy" baby at full term and at a "healthy weight". After about a month, however, Charlie's parents noticed that he was less able to lift his head and support himself than other babies of a similar age.

    Doctors discovered he had a rare inherited disease - infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).

    The condition causes progressive muscle weakness and brain damage.

    In October, after he had became lethargic and his breathing shallow, he was transferred to the Great Ormond Street Hospital...

    Charlie's parents wanted to take him to see specialists in the USA, who had offered an experimental therapy called nucleoside.

    But doctors at GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life.

    When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision. This is what happened in Charlie’s case...

    Richard Gordon QC, who led Charlie's parents' legal team, had told Court of Appeal judges that the case raised "very serious legal issues".

    "They wish to exhaust all possible options," Mr Gordon said in a written outline of Charlie's parents' case.

    "They don't want to look back and think 'what if?'. This court should not stand in the way of their only remaining hope."

    Mr Gordon suggested that Charlie might be being unlawfully detained and denied his right to liberty.

    He said judges should not interfere with parents' exercise of parental rights.

    Lawyers, who represented Charlie's parents for free, said Mr Justice Francis had not given enough weight to Charlie's human right to life.

    They said there was no risk the proposed therapy in the US would cause Charlie "significant harm".

    Katie Gollop QC, who led Great Ormond Street's legal team, suggested that further treatment would leave Charlie in a "condition of existence".

    She said therapy proposed in the USA was "experimental" and would not help Charlie.

    "There is significant harm if what the parents want for Charlie comes into effect," she told appeal judges. "The significant harm is a condition of existence which is offering the child no benefit."

    She added: "It is inhuman to permit that condition to continue."

  7. Charlie Gard's parents have been told they will be able to spend more time with their terminally ill baby.

    Chris Gard and Connie Yates had been expecting their 10-month-old's life support to be turned off on Friday.

    Great Ormond Street Hospital has since disclosed it is putting plans in place for Charlie's care to allow his family to spend more time with him...

    His parents said they had been denied their final wish to be able to take their son home to die and felt "let down" following the lengthy legal battle.

    Alongside a video posted on YouTube on Thursday, Charlie's parents wrote: "We are utterly heartbroken spending our last precious hours with our baby boy.

    "We're not allowed to choose if our son lives and we're not allowed to choose when or where Charlie dies.

    "We, and most importantly Charlie, have been massively let down throughout this whole process."

  8. We’ve been talking with Great Ormond Street since November last year – when they first started talking about court – about what palliative care meant, and we had three options: one option was to let Charlie go in hospital; the other option was to let Charlie go to a hospice; and the third option was to let Charlie go home to die.

    So we chose to take Charlie home to die and we have said this for months, that that is what we want. That is our last wish, if it went this way, the way it’s gone. And we promised our little boy, every single day, that we would take him home, because that is a promise we thought we could keep.

    Chris Gard, Charlie’s father, added that after the European Court of Human Rights decision, the couple reiterated to the hospital their wish to bring Charlie home to die or to take him to a hospice if that was not possible. Both preferences were rejected by the hospital, according to Gard.

    They said no to both. He has to die in that hospital tomorrow [30 June 2017].

    The boy’s parents also claimed that the hospital refused their request to delay removing life support until members of their extended family can pay a final visit to Charlie. Connie Yates claimed: “We’ve literally begged them today to give us this weekend.”

    Chris Gard added:

    Some of our family and friends can’t come. They can’t come before tomorrow. So the last time they saw Charlie will be the last time they ever see him.

  9. The parents of terminally ill Charlie Gard broke down in tears as they listened to medical evidence relating to his rare genetic condition and what his doctors say is a “vanishingly small” chance of his survival.

    But an American doctor who has agreed to attempt a pioneering treatment for his mitochondrial disorder, said that it was “reasonable” to attempt to save his life and if he were in a hospital in the USA his parents would have the option...

    He was born with a condition so rare it only affects a handful of people in the world. It saps energy from the organs and has left him blind and deaf. Doctors believe he has also suffered brain damage.

    Miss Yates, 31, broke down in tears as the doctor in the USA, who cannot be identified for legal reasons, said Charlie was in the “terminal” stages of his illness and he will “certainly die without treatment”.

    The condition is normally fatal within the first year and all 20 children known to have suffered it have passed away...

    The doctor, one of the leading experts in the field worldwide, said treated patients with a similar type of mitochondrial disease, but it had only affected their muscles not their muscles and their brain, as was the case with Charlie.

    In studies on mice where the similar condition did effect the brain they managed to prolong their lives up to three fold, but this was only four per cent of their lifespan.

    Giving evidence over the phone from a hotel room, the doctor admitted that he had not realised how ill Charlie was, adding that it was “very concerning, he seems to be very severely affected neurologically, that makes me a bit less enthusiastic about having him come to the United States.”

    But he said that if Charlie had fallen ill in his hospital or “any institution in the US” then they would attempt the radical treatment, which should not put Charlie through any additional pain.

    However, the professor involved in his care at GOSH, who also cannot be named, said that there were “cultural differences” in the UK.

    She said “if we don’t consider something is in the child’s best interest” then they would not do it, but “in America, provided parents have the money, the financial means to access care, doctors will do anything parents would like to be done regardless of what is happening to the child."

  10. One option, the couple said, was to let Charlie die at home.

    “So we chose to take Charlie home to die,” his mother said Thursday in the video, which was posted on YouTube. “And we have said this for months that this is what we want. That is our last wish, if it went this way — the way it's gone. And we've promised our little boy every single day that we will take him home because that is a promise we thought we could keep.”

    Charlie's father said in the video that they want to take their son home and give him a bath, cuddle with him on the couch and let him rest in a crib he has never slept in.

    “We're now being denied that,” Gard said. The parents said hospital personnel told them they could not arrange transport for Charlie and, when the parents offered to pay for it, the parents said the hospital personnel told them that was not an option.

    When asked about those claims, a spokesman for Great Ormond Street Hospital for Children NHS Foundation Trust said in a statement: “As with all of our patients, we are not able to and nor will we discuss these specific details of care. This is a very distressing situation for Charlie’s parents and all the staff involved and our focus remains with them.”...

    Yates, Charlie's mother, said through tears Thursday that Aug. 4, 2016, was the best day of their lives because it was “the day that Charlie was born.” June 30, 2017, she added, would be the worst day of their lives.

    “We know what day our son is going to die, and we don't even get any say in what happens to him,” Charlie's father said.

  11. Great Ormond Street Hospital went to the courts with this question: Was it legal, and in Charlie's best interest, for the hospital to remove the child from life support — even against his parents' wishes?

    In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts” that the therapy could not repair structural brain damage.

    “Transporting Charlie to the USA would be problematic, but possible,” he wrote. “Subjecting him to nucleoside therapy is unknown territory — it has never even been tested on mouse models — but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”

    He said it was “with the heaviest of hearts but with complete conviction for Charlie’s best interests” he decided that the hospital could withdraw treatment, except for palliative care, to let Charlie “die with dignity.”

  12. Charlie Gard, an infant, is going to die without a treatment that his parents wish to deploy against his mitochondrial DNA depletion syndrome, a treatment that they can afford thanks to the generosity of others. The highest court in Europe has sided with the English hospital’s wishes that Charlie “die with dignity” over his parents’ wish that he be released into their custody to try an experimental treatment in America. Further, it is decided by the principalities and powers that Charlie is going to die in that hospital even though his parents would at least wish for him to come home with them…

    Gard’s parents, knowing that so many are rooting for them and praying for them, have released videos on YouTube, which I can barely bring myself to watch. They have a hostage-situation feel that is Kafkaesque...

    The millions who have been following this story feel they know how it should be resolved; that Gard’s parents — not the doctors in an English hospital, not the European Court of Human Rights — should have the final say over whether Charlie can be released to his parents’ care and brought to America to receive this treatment. Or if the courts, after consultation with the doctors, insist on restraining them from traveling, that the hospital should honor the parents’ wish, expressed for months, to take him home, give him a bath, and cuddle him in his final hours.

    These millions of people feel something sudden when the doctors’ decisions and those of the court are dressed, as they are, in the language of euthanasia. And they feel themselves crying out for an authority figure to point out the obvious, to speak with clarity about the duty of the state to get out of the way of parents trying to act in the best interests of their child. They want someone to step in and say that NHS and the British state may have given up on Charlie Gard’s life, but his parents and other doctors are not obliged to do the same if they reasonably believe this other treatment could help...

    Paglia [Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life] is on solid theoretical ground when he says that there is a judgment to be made, and that it is good to avoid “aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” No one is morally obliged to be kept alive by machines all their life, or continue undergoing radical surgeries or procedures that delay death. No one is obliged to empty their entire fortune and the state isn’t obliged to expend the public treasury on uncertain treatment.

    So it may be the case that Charlie Gard’s parents would be adding to the suffering of their son by traveling to America with him while he is mortally ill. It may be the wrong decision, but it should still be their decision. And the nucleoside bypass therapy they want for their son is hardly likely to increase Charlie’s suffering, as it is not an invasive or radical surgery, it is an oral medication...

    But besides being patronizing, the Vatican’s statement is a gross distortion of the situation. It portrays the Gards as acting alongside the doctors, but subject to outside manipulation. The Gards are resisting the doctors. The Gards are not facing “their decisions.” They are facing authorities that have overridden them. The good bishop writes that the Gards “must be heard and respected, but they too must be helped to understand the unique difficulty of their situation.” The people “helping” them to understand are speaking in the euphemisms of “death with dignity.”

  13. Arthur Estopinian’s son, Arturito, now six, received the treatment Charlie’s parents, Connie Yates and Chris Gard, raised more than £1.3million for their son to have.

    Arthur and his wife Olga, 42, who flew from their home in Maryland, Baltimore, to support the couple have been in “constant contact” with the family throughout their battle.

    Last night Mr Estopinian said he was heartbroken Charlie was not given a chance to try the therapy that saved their own son’s life after he was “sent home to die” aged 18 months.

    Almost five years on, Arturito continues to improve on daily doses of the therapy.

    Charlie’s family also has the support of Peter Smith, 43, from Thakeham, West Sussex, whose son, Maxwell, five, has “transformed” since he received the same treatment a year ago for a similar genetic disorder through a private prescription.

    Mr Estopinian, 51, said: “This medicine is being pioneered by a premier expert on these diseases. No one actually knows if it would help Charlie, but doctors treating my son believe he can get stronger.

    “As a parent I don’t understand why doctors in England would deny him this chance. Chris and Connie are unbelievable parents and should have the parental right to make this decision.

    “To have the pain of seeing your child dying but no support from doctors or the UK legal system must be unbelievably stressful. All over the world people are watching this case and wondering why don’t they give this little angel a chance to be saved."

    “It is not an easy road, but it is absolutely worth it. By removing his life support these doctors are killing their sunshine.”

  14. “Charlie Gard’s life is more valuable than British and European bureaucrats realize,” explains Bobby Schindler, President of the Terri Schiavo Life & Hope Network.

    “The central issue of the Charlie Gard struggle,” continues Bobby Schindler, “is not about rationing, limited resources, or even life support. At issue is whether universal healthcare means that bureaucrats and judges will determine appropriate treatment, or whether parents like Charlie’s with the energy, finances, and physicians to care for their child will be allowed to do so.”...

    “We don’t need judges posing as anguished moral philosophers, weighing what makes a life worth living. We simply need them to rule on whether mothers and fathers have an inalienable right to care for their own children. Are we better off in a society where government officials are encouraged literally to separate loved ones from each other? Is it better for Charlie Gard to live and die at home with his family, or in a state institution?”

  15. Once upon a time, the highest lords in the land stopped the parents of a tiny, terribly ill child from trying to save him and instead ordered his death in the palliative-care ward.

    It’s not some sick reverse fairy tale, but real news: British authorities insisted on taking little Charlie Gard off life support, rather than let his parents take him to America for an experimental treatment. They wouldn’t even let his family take him home to die.

    A rare genetic condition (only 16 cases in the world) left Charlie suffering progressive muscle weakness and extensive brain damage.

    His parents, Chris Gard and Connie Yates, desperately wanted to bring him to the States for a treatment that held out some hope, and they’d raised the money to pay for it.

    “He just needs the treatment that’s going to potentially help him,” Connie pleaded.

    But doctors in the National Health Service concluded it was best to just turn off the machines and feed him enough drugs so he’d die pain-free at London’s Great Ormond Street Hospital for Children.

    And they didn’t care what the tot’s parents thought.

    Chris and Connie waged a tooth-and-nail legal fight, all the way up to the European Court of Human Rights, and lost: The judges backed the credentialed experts.

    Maybe the experts were right: Maybe the hope of treatment was false, the damage already too great. But why should they have the unilateral power to decide?

    They probably had the best command of the facts — but no expert can claim special standing when it comes to values. How did this case meet what should be the extremely high standard for overruling parents’ decisions about their child’s care?

    Whether you blame socialized medicine or soaring secularization, it’s no secret that European medicine and law hold ever-less respect for life. Euthanasia is growing more common and increasingly involuntary. “Compassion” somehow more and more dictates death.

    To be clear: Rejecting extreme measures is a fully moral choice and every patient’s right, as no less than Pope John Paul II demonstrated in his final days.

    But it’s hard to see any moral standard that empowers the state to prevent treatment that it isn’t even paying for and then not even allow an infant to die in his mother’s arms.

  16. Wading directly into a charged moral and political debate in the UK, and also appearing to recalibrate an earlier statement from the head of his own Pontifical Academy for Life, Pope Francis on Sunday expressed hope that the desire of 10-month-old Charlie Gard’s parents “to accompany and care for their own child to the end” will be respected.

    “The Holy Father follows with affection and commotion the situation of Charlie Gard, and expresses his own closeness to his parents,” reads a statement issued by Greg Burke, the pope’s spokesperson.

    “He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”

    The pope’s message is aligned with his frequent denunciation of what he calls a “throw-away culture,” a term he uses to describe ways in which those society deems to lack value are discarded, such as unborn children, the disabled and the elderly.

    The message comes three days after a statement released by the Vatican’s Pontifical Academy for Life, signed by Italian Archbishop Vincenzo Paglia. That statement, which appeared to express sympathy for a court ruling preventing parents of a 10-month-old infant from pursuing experimental treatment in the U.S. to combat a life-threatening disease, drew criticism from several camps, including pro-life leaders in the Church...

    The therapy Connie Yates and Chris Gard want to give to their son is currently being administered to Arturito Estopinian, a six-year old who continues to improve on daily doses of the therapy. His parents, Arthur Estopinian and his wife Olga, have been in “constant contact” with the Gard family.

    The British paper Sunday Express reported on Saturday that Estopinian said he was heartbroken Charlie was not given a chance to try the therapy that saved their own son’s life, after he was “sent home to die” aged 18 months.

  17. Parents of a tot who has a similar syndrome to Charlie Gard have admitted that they’re glad they don’t live in Britain in the wake of the controversial court ruling.

    Arthur and Olga Estopinan believe that their six-year-old son Arturito “would surely be dead by now” if he wasn’t granted access to the treatment Charlie’s parents are fighting for.

    Arturito has a similar mitochondrial depletion syndrome to Charlie and was the first person in the United States to receive the experimental and pioneering nucleoside therapy.

    It’s the same therapy Charlie’s parents, Connie Yates and Chris Gard, are fighting for their son to receive…

    Arthur, 51, a government consultant, said: “We feel very fortunate to be American and not British – because if we lived in the UK Arturito would surely be dead by now.

    “We are beyond shocked that doctors in the UK are saying Charlie should ‘die with dignity’.

    “How insensitive when there is a treatment which could save Charlie’s life and eminent doctors in the US who are willing to help him.”

    Arthur and Olga feel strongly about Charlie’s cause because they were also told there was no treatment or cure for their son.

    Like baby Charlie, Arturito seemed perfectly healthy when he was born in 2011, but his speech development began to stall at 14 months.

    Although doctors initially thought the tot had flu, he was admitted to hospital and placed on a life-saving artificial ventilator when his condition deteriorated.

    Medical experts delivered the devastating diagnosis that Arturito had TK2 mitochondrial DNA depletion syndrome, a rare genetic disease which causes muscle weakness.

    But Charlie’s type, known as RRM2B is even rarer - he is believed to be only the 16th known sufferer in the world.

    Even though nucleoside treatment is an option, there are risks of the therapy as it’s yet to be tested on humans or animals suffering from the mitochondrial condition.

    Doctors have also diagnosed Charlie with severe irreversible brain damage, which wouldn’t be reversed by the drugs.

    As he is in the terminal stages of his illness a High Court judge agreed it would be “futile” and “not in Charlie’s best interests” to undergo nucleoside treatment.

    Arturito’s dad disagrees with the ruling, remarking: “Olga and I didn’t believe it. Like Chris and Connie, we too desperately scoured the internet and eventually after stumbled across the nucleoside drug therapy.

    “There was no guarantee it would work. But after being told by so many doctors there was nothing we could do at all, it was hope.

    “We were also warned that these medications might cause side effects but as Arturito’s only alternative was death we didn’t see any harm in trying it.”

    Within days of meeting with a doctor, Arturito became the first person in the United States to have the therapy, and he’s since made important recovery steps.

    His dad Arthur said: “We saw a difference in our son in just three months.

    “Before the therapy he’d been unable to move his fingers or toes but after several months he could move his hands and feet.

    “He was also more alert and awake. It was amazing to see our little boy coming back to us.

    “There were no side effects either and after a year on the experimental medications he was well enough to come home.”...
    Business consultant Olga, 43, added: “Nobody can deny the miracle that is before our eyes.

    "Arturito is able to communicate with shakes of his head and clicks of his tongue – which mean ‘I want more’.”

    The Estopinans, from Baltimore, Maryland, said their son needs round-the-clock care from a team of nurses - but is growing stronger.

  18. Kropach N, Shkalim-Zemer V, Orenstein N, Scheuerman O, Straussberg R. Novel RRM2B Mutation and Severe Mitochondrial DNA Depletion: Report of 2 Cases and Review of the Literature. Neuropediatrics. 2017 May 8. doi:10.1055/s-0037-1601867. [Epub ahead of print]

    Purpose To describe the clinical presentation and implications of mitochondrial DNA depletion disorder of two siblings with early fatal encephalomyopathy and a novel mutation in the RRM2B gene. The relevant literature is reviewed. Methods We describe two brothers aged 2.5 months and 1 month, respectively, who were hospitalized in a tertiary pediatric medical center for evaluation of focal seizures, hypotonia, poor feeding, failure to thrive, lactic acidosis, and developmental delay. The older brother also had seizures, and the younger had severe bilateral neurosensory deafness. Results Genetic sequencing of the RRM2B gene revealed the same novel mutation in both the siblings. Both children died due to respiratory failure at ages 3 and 2.5 months, respectively. Conclusion The combination of neonatal hypotonia, developmental delay, and lactic acidosis should raise a clinician's suspicion of a mitochondrial depletion disorder and prompt further genetic studies.

  19. “It seems to me completely wrongheaded that the state should be stepping in here when the decision that the parents are making is really aimed at the best interests of the child,” Dr. Melissa Moschella, a Catholic University of America philosophy professor, told CNA.

    “It’s not crazy, it’s not abusive, it’s not neglectful. It’s the decision of parents who want to, however they can, to give their very sick child a chance for life.”

    She said such a decision “should be completely within the prerogative of the parent,” citing the United Nations’ Universal Declaration of Human Rights. According to Moschella, that declaration “clearly indicates that the parents, not the state will have primarily responsibility.”...

    Moschella said the legal decisions favoring ending life support for Charlie are effectively “telling the parents that their child’s life has no value and that therefore they should cease any effort to heal him of his disease.”

    These decisions represent a “quality of life” ethic and an ideology that say human life is valuable only if it meets certain capacities.

    “It’s the same ideology that underlies allowing euthanasia or physician assisted suicide,” she said. “That’s completely opposed to the Catholic view in which every human life has intrinsic value regardless of the quality of that life.”

  20. US President Donald Trump has made an eleventh-hour intervention in the case of terminally-ill baby Charlie Gard by offering help to save him.

    Speaking on Twitter, Mr Trump said:

    Donald J. Trump ✔ @realDonaldTrump
    If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.
    9:00 AM - 3 Jul 2017...

    On Friday a picture of the couple sleeping on either side of their son in hospital was posted on their Twitter account alongside the hashtags #jesuisCharlieGard #charliesfight #letcharliegohome.

    The couple released an emotional video a day earlier saying they had been told Charlie would die on Friday.

    They said they had been denied their final wish to be able to take their son home to die and felt "let down" after losing their legal fight.

    The hospital later confirmed it was "putting plans in place for his care".

  21. By Michael Egnor

    There is a controversy going on in England over a child with a fatal disease. The child, Charlie Gard, was born with a mitochondrial disorder that causes brain damage and eventually death. He is currently on a respirator and his parents want to bring him to the U.S. for experimental treatment. The British health service (the NHS) has insisted that Charlie’s respirator be removed and that he be allowed to die, and they have denied his parents permission to take Charlie out of the country for treatment. British courts have sided with the NHS, and it appears that Charlie will soon be removed from the ventilator to die, against his family’s wishes.

    There are complexities to the case from an ethical standpoint. All parties agree that due to his disease, Charlie has little to no chance of survival. His parents’ plea to take him abroad for treatment is a desperate one, and is highly unlikely to save his life. However, the parents are not asking the NHS to pay for the experimental care. They have raised funds privately. They are merely asking for the custody of their child so they may pursue treatment elsewhere.

    Yet the NHS and the British courts refuse to release Charlie to his family, and the NHS plans to disconnect his respirator. (continued)

  22. (continued)Here, in my view, are the ethical principles involved.

    First, there is no ethical obligation to prolong the process of dying using heroic treatments. Removing a respirator from a dying patient with his/his family’s consent is perfectly ethical. I have complied with such requests from families many times, and I believe that for many dying patients removal of heroic care (such as ventilators, surgery, antibiotics, etc.) is appropriate and compassionate. I hope that my own family doesn’t put me through heroic treatments that will merely prolong my death when my time comes.

    I make a clear distinction between heroic care and ordinary care. Ordinary care includes hydration, nourishment, clothing, shelter, and hygiene, and I believe that all people, including dying people, have a right to ordinary care. I would no sooner remove nourishment from a dying person than I would remove clothing or shelter from a dying person.

    But I believe that removal of heroic extraordinary care can be ethical for the dying, if they or their family consent.

    The problem with the NHS’s and the courts’ decision in Charlie’s case is that the decision to remove the ventilator is being forced on Charlie’s family, against their will. Decisions to remove heroic care from the dying can be ethical, but these decisions must be made by the patient or his family, not by the hospital or by the government. Final end-of-life decisions are personal and private, and are not the purview of the medical profession or of the government. It is the responsibility of medical professionals and the government to advise and support the terminally ill in accordance with their wishes, not to hasten their death.

    And just a word on the notions of “quality of life” and “futility.” Both concepts seem central to ethical decision-making in terminal illness, but acceptance of these concepts runs great risks. “Quality of life” can mean different things: it can mean that a person is suffering, and it can mean that the person’s life is judged to be of lesser value than the lives of others. All too often an ethical statement that a person has a “poor quality of life” — which may be true in the sense that the person is suffering — is twisted to mean that a person’s life is intrinsically worth less than that of another person in better circumstances. “Poor quality of life” must never be intended or taken to mean that the life of the suffering person is of diminished value, or that their life may be extinguished because of its “poor quality.” The ethical standard in the West for the better part of 2000 years has been that the least among us — those who are dependent or suffering — deserve greater protection and care, not less. People with “poor quality of life” need help and care, not death.

    The other term that can be misused is “medical futility.” It is a term employed to mean that further heroic treatment is unlikely to be of value to the patient, and in that sense it can be true. But “futility” should not be a basis for denying routine care — hydration, feeding, clothing, shelter, hygiene — to seriously or terminally ill persons. It may be futile to provide someone with another round of chemotherapy or with another operation, but it is not futile to feed someone who is dying.

    In the de-Christianizing West, we are facing dangerous trends in medical ethics. The rising acceptance of euthanasia and the devaluation of the lives of disabled and dying persons is a manifestation of those trends. The behavior of the NHS and the British courts in the case of little Charlie Gard is emblematic of the growing disregard for the sanctity of life and the dignity of seriously ill people. End-of-life decisions should be left to the patient and his family, and it is the responsibility of the medical profession and the government to protect the dignity and the right to life of patients with terminal illnesses.

  23. Ten-month-old Charlie Gard will die later today, and the one institution that should speak for him seems to be more concerned about toeing the politically correct line.

    The Catholic Church should be one of the most pro-life voices out there -- which is why Archbishop Vincenzo Paglia's statement on the terminally-ill child set to be disconnected from his feeding tube is so disturbing.

    The Italian archbishop, who is president of the Pontifical Academy for Life, issued this statement to Vatican Radio on Charlie Gard after the European Court of Human Rights denied his parents' last appeal to move Charlie to the United States for experimental treatment:

    "The interests of the patient must be paramount, but we must also accept the limits of medicine and [...] avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family."

    This should be an odd wish-washy statement to anyone who has followed the Charlie Gard saga. Little Charlie was born with a rare degenerative disease and has been living in the intensive care unit at Great Ormond Street Hospital in London for most of his short life.

    Doctors at the hospital say there is nothing more they can do for him and that they should remove Charlie's feeding tubes and ventilator. His parents disagree, and have even raised £1.3 million (about $2 million) to take him to the United States for treatment with a leading expert that has worked with children with similar conditions.

  24. In the United Kingdom, the government is deciding for itself when to pull the plug in a case sparking international news coverage and horrified responses. Charlie Gard, an infant with a serious and rare genetic condition and significant brain damage, is terminally ill. His parents would like to pursue an experimental treatment in the United States. Doctors, granted authority by the British government and their socialized medical system, have told them no. They are ordering that Gard's life support be shut down. The parents turned to the European Court of Human Rights for support and were rebuffed.

    Note that this is not a matter where the British government is being asked to bankroll Gard's experimental treatment. The parents themselves have raised the money to bring him to the United States. Rather, doctors and the British government are overruling the parents and deciding that they have the authority to an end the child's life and what they believe to be the child's suffering.

    While it seems unlikely that the treatment in the United States would change Gard's tragic fate, this case should nevertheless be seen as a dangerous assertion of authority disguised as mercy.

    For libertarians or anybody who supports an individual's right to end his or her own suffering, what's happening in the United Kingdom is an important and useful reminder of why some conservatives are wary about allowing this right. There is a slippery slope here: An individual's right to decide can transform into a government's insistence on making that call for those who aren't in a position to assert themselves. Western governments use their authority to override parents' decision-making in many areas, from schooling to vaccinations. But what's supposed to be a mechanism to shield children (who have little agency) from parental abuse becomes a method for paternalistic intervention.

    After all, what Gard's parents are doing is essentially the opposite of what should trigger government intervention. They are not abusing the child. They are doing what parents are supposed to do: everything they can to save him. And they should have the liberty to do so.

    It should not be difficult to avoid the slippery slope that transforms voluntary euthanasia into government-sanctioned termination. It's a matter of respecting the choice of the individual or those who are responsible for making those choices. Government intervention should be limited to situations where it can be shown that the private responsible parties are abusing or neglecting the patient, or where there are no private responsible parties.

    One other issue worth examining in the Gard case: The authorities have been quick to dismiss this experimental treatment because it probably won't work. They are probably right. But that's not where medicine and science ends. The development of treatment for an illness is an iterative process that includes many, many failures along the way to success.

  25. A US hospital has reportedly offered to treat British baby Charlie Gard for free in a last-ditch effort to save the terminal ill child’s life.

    It comes after Donald Trump intervened and said the US would be “delighted” to help the 10-month-old, who suffers from the rare genetic condition

    mitochondrial depletion syndrome, which The unnamed hospital has reportedly offered to give the baby a new experimental treatment at no cost if he is able to travel to the US.

    Charlie has been the subject of a lengthy legal battle after Great Ormond Street Hospital doctors proposed switching off his life support machine. His parents, Connie Yates and Chris Gard, challenged the decision but lost their battle when the European Court of Human Rights (ECHR) refused to intervene, effectively confirming that the machine could be turned off...

    The offer of help from a US hospital, reported by The Sun, came a day after Mr Trump wrote on Twitter: "If we can help little Charlie Gard, as per our friends in the UK and the Pope, we would be delighted to do so."

    The Pope had earlier said he was praying for Charlie’s parents and was following the situation “with affection and commotion”.

    A White House spokesperson added: “Upon learning of baby Charlie Gard’s situation, President Trump has offered to help the family in this heartbreaking situation.

    “Although the President himself has not spoken to the family, he does not want to pressure them in any way.

    “Members of the administration have spoken to the family in calls facilitated by the British government.

    “The President is just trying to be helpful if at all possible.

    “Due to legal issues, we cannot confirm the name of doctor or hospital where the baby could be treated in the United States.”

  26. Similar authoritarian care withdrawals as has been imposed on Charlie Gard have happened here too–and to very ill patients of all ages. I get into a few of these cases involving infants today over at First Things.

    There was the Baby Ryan case in Seattle, in which a hospital actually reported a family for child abuse because they obtained an injunction against removing kidney dialysis. In the end, the doctors were wrong that death was imminent. The boy lived four years as a happy, if sickly child, who loved to give high-fives.

    The parents of Baby Terry in Michigan were stripped of their parental rights for refusing to consent to withdrawing life support.

    In Canada, doctors treating Baby Joseph insisted on the right to remove life support from a terminally ill baby and refused a tracheotomy that would have permitted the baby to go home to die with his family. Priests for Life eventually paid for the baby to be flown to the USA for the procedure, which was successful. Joseph died several months later in his parents arms.

    The Charlie Gard case is unique in only one respect: It is the only futile care case I know of in which the hospital and the law is preventing discharge to another facility or allowing the patient to go home to die. From, “Whose Baby is Charlie Gard, Anyway?”

    The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies—and others facing futile-care impositions—ultimately owned by the hospital and the state?

    Again. This isn’t about socialism–although that issue is relevant. More, it is about cost containment–including in free market systems–and the attempt by the bioethics movement and medical intelligentsia to replace the equality/sanctity of life ethic with a more utilitarian “quality of life” view.

  27. The time has come for your baby to die,” a doctor told the grieving parents of a catastrophically ill baby. No, this wasn’t the ongoing Charlie Gard case—so prominent in the news today—in which United Kingdom doctors and judges have told Charlie’s parents that their son’s life support will be removed, no matter what they want. (Charlie has a rare terminal mitochondrial disorder.) Rather, that blunt declaration was uttered in 1994 in Spokane, by a doctor to the parents of Ryan Nguyen, who—born at just twenty-three-weeks gestation—was on kidney dialysis and struggling for his life.

    Then as now, doctors declared that further life-sustaining treatment of the child was “futile” and would only prolong his suffering. Then as now, desperate parents sought court relief against their son’s being pushed into the grave sooner rather than later. But then, unlike now, a court in Ryan’s case temporarily blocked the removal of treatment, pending trial.

    The court never decided who had ultimate say over Ryan’s care, his parents or medical professionals, because his treatment was transferred to a different doctor who did not view his case as futile. Ryan was soon weaned off dialysis and survived for more than four years, a time in which he was a generally happy, if sickly, child who liked to give “high fives.” Had his original doctors successfully imposed their futile-care philosophy on their patient and his parents, Ryan would have died before he’d truly had a chance to live.

    Before Baby Ryan’s ordeal, the parents of “Baby Terry”—also born after twenty-three weeks gestation—faced a similar ordeal. The ethics committee at the Hurley Medical Center in Flint, Michigan weighed in on August 9, 1993, opining that to honor the parents’ desire to continue Baby Terry’s treatment “would be contrary to medical judgment and to moral and ethical beliefs of physicians caring for the patient” (my emphasis). In other words, when it came to choosing between the values of the parents—based in large part on their religious faith—and the values of doctors and hospital bioethicists, the state argued that only the latter matters.

    On that basis alone, a judge found Terry’s parents unfit to make health-care decisions for Terry and stripped them of their parental rights. He awarded temporary custody to the maternal great-aunt, who had previously stated her willingness to obey the doctors. Before that could happen, the infant died in his mother’s arms, aged two-and-a-half months.

    In 2011, a similar struggle hit the headlines. Ten-month-old Joseph Marraachli was diagnosed with a terminal and progressively debilitating neurological disease. He was being cared for in a London, Ontario ICU when doctors told his parents, Moe Marraachli and Sana Nader, that they were going to withdraw all life-sustaining care.(continued)

  28. (continued)Moe and Sana vehemently disagreed, and a bitter dispute erupted between them and the hospital’s doctors and administrators over continuing Joseph’s care. There were two areas of disagreement. First, there was the hospital’s stated intention to end all life-sustaining treatment. Second, when Moe and Sana asked doctors to perform a tracheotomy so that Joseph could be taken home, the doctors refused, claiming such a procedure was medically and ethically unwarranted.

    Litigation ensued. The bitter impasse was broken when the American nonprofit organization Priests for Life paid to transfer Joseph to a hospital in St. Louis that was willing to perform the surgery. The operation was a success, and Joseph was brought home, where he died peacefully in his sleep five months later.

    These, Charlie’s, and many other similar cases I could recite, involving profoundly ill people of all ages, are examples of what is known in the bioethics trade as “futile care” or “medical futility”—or, as I call it, futile-care theory. FCT authorizes doctors to refuse or withdraw wanted life-sustaining medical treatment over the objections of family and patients when the doctors and/or a bioethics committee believe that the patient’s quality of life makes that life not worth living—or, lurking in the subtext, not worth the resources required to sustain it.

    A couple of important points need to be made: We are not talking about an intervention without a potential physiological benefit to the patient—a medical determination. Rather, FCT constitutes a value judgment. As bioethicist Dr. Stuart Youngner once put it, “futility determinations will inevitably involve value judgments about: 1) whether low probability chances are worth taking; and 2) whether certain lives are of a quality worth living.”

    Worse, FCT empowers strangers to make medicine’s most important and intimate health-care decisions. Deciding whether to accept or reject life-sustaining care is one of the most difficult medical choices. Under FCT, a patient’s decision—whether it be the desire of an infant patient’s guardians or written in an adult patient’s advance directive—matters less than institutional and professional opinions.

    Given all that, Charlie Gard’s heartbreaking situation is not surprising. However, until Charlie’s case, the patient or family has always had the option of finding alternative care. The hospital refusing Ryan’s dialysis did not seek to prevent his transfer. Neither did the hospital in the Baby Joseph controversy.

    This is where Charlie Gard’s case is breaking new and even more authoritarian ground. Not only are doctors and judges forcing Charlie off life-support; they are also declaring that their ethics rule over Charlie’s life, even if the parents—Chris and Connie Gard—find alternative care. As far as I know, this is unprecedented in futile-care controversies…

    The only silver lining in this tragedy is that a very sick baby’s life still has the power to move hearts. Not only have Chris and Connie received tremendous popular support internationally, but they are also being backed by two of the most visible leaders in the world: Pope Francis and Donald Trump.